Hi
I’ve had tingling in my left leg for over a year and eye problems a few years ago.
I was sent for an MRI scan back in the summer which showed legions on my brain, so I was sent for a lumber puncture to confirm MS. But results have come back to say I have the immune system anti bodies in both my spinal fluid and bloods. Apparently this is not usual in MS - I’ve been told they usually only occur in your spinal fluid with MS. So it still could be MS or maybe another neurological inflammation. More tests are needed.
Has anyone else had this experience on a journey to a diagnosis?
I have been waiting over a year now for an answer to my symptoms and all the waiting is very stressful and I am feeling very anxious!
Hi - that’s interesting to hear- thanks for replying.
Have you been diagnosed yet?
I think the next step for me is further tests, but I need to meet with my consultant to find out which tests and get some insight into the LP tests results.
Thank you. Good luck with it all. I hope you get a diagnosis soon and can move onto the next stage at least. All this waiting is anxiety provoking in itself!
I am still waiting for a diagnosis too. I had an MRI last July that showed multiple legions. Then I had a LP in September, waited about 7 weeks for the results (which I had to chase for), only to be told that they hadn’t tested my blood against the spinal fluid. The spinal fluid showed multiple o bands but because they didn’t test my blood at the same time I’m in limbo still. They did seem to test my blood for other things though like glucose. Which as a type 1 diabetic, I didn’t really need them to test.
I just had another MRI with contrast this time. Waiting on results, although I feel I need to chase again as I don’t have an appointment booked now until the end of may! They surely can’t expect me to wait until then for the results.
It is strange how some people have one MRI and are instantly diagnosed.
Yes everyone’s journey to a diagnosis seems very different. Sorry to hear about the delay on your results only to be told they didn’t do the full suite of tests! That sounds very frustrating.
I had an MRI back in July and had to wait until early January for a lumber puncture! Results from that took 3 weeks and I also had to chase them up. I nowbhave to wait to see my consultant again. The waiting is tortuous.
